3 years ago today, I tested positive for an infection that has changed my life. I’m 36 and have been disabled for 3 years. I will have to take medication for the rest of my life. I have had pain every day for 3 years. I have learnt to parent with deafness, blurred vision, 1/3
contracting Covid, and it has been the greatest mass disabling event since WW1. And Boris said it was all ‘bollocks’ about the very same people that saved his life.
That’s gratitude for you.
UK Covid-19 Inquiry. 4/4
@covidinquiryuk
exhaustion, a heart condition, and 3 other chronic conditions and extensive damage, all caused by a Covid Infection I got in the line of duty. I’ve had to fight to save my career from the very same people who let us get Covid from poor PPE, poor planning, and poor preparation, 2/
despite it being the 2nd wave. And despite working hard to return to work, I’m now facing the sack at Christmas. Everyone from the Prime minister to the civilians on the street clapped for us NHS ‘Heroes’ and now we have been forgotten. Thousands of NHS staff DIED from 3/4
Today is my last day of being an NHS nurse. Nursing is a career I have loved, it gave me the opportunity to be my authentic self by caring for those in need. Now I have been awarded Ill health retirement at the grand old age of 36 from being disabled on the frontline. 1/
I can’t describe the pain and heartache of testing covid positive for a 6th time, 4th since
#LongCovid
. Knowing the incoming pain and symptoms, the likely pericarditis again and the months of recovery ahead. The pain of this outweighs the pain of the virus.
I’m heartbroken 💔
It’s a sad day, but one many of us with
#LongCovid
have faced. I will continue to nurse in the best way I know how, by being a good mum, wife and friend to you all. I will continue to advocate for those disabled by this awful virus and will challenge the the administration 2/
@S52Sarah
Thank you for your reply, witness testimonies like yours mean an awful lot to those of us with LC. The deniers are numerous and it’s so hurtful and harmful to our community. Thank you for taking the time to write this and I hope your experiences in ITU haven’t caused you harm. 😞
that did this.
Today I have raised a glass to the end of one era and the beginning of another, I’ve cried, but now the weight has been lifted. You haven’t heard the last from me.
Thank you to all of you who have supported me and my family through a very difficult 4 years. 3/
@FrankSm42564539
Frankie, it’s heartbreaking to read stories like yours, Teaching is a vocation just like nursing and they have lost a huge asset in you 💔
It’s a big day today! I’m off to London to represent those of us who worked on the frontline and contracted
#LongCovid
in the line of duty.
Please show your support and share this far and wide, NHS staff are STILL unprotected, it’s time for change!
@ONS
I actually believe the reality is much higher than this for these reasons
- Stigma
- Denial
- No appropriate testing
- Limited data collection
I have Long Covid, the most exasperating aspect is the continued repeat infections happening all around me, with zero protection 🦠
I’m in a state of
#longcovid
relapse. Put a load of washing on requires 2 hours of rest. Heart rate all over the place. Symptoms are skyrocketing. What I need is rest. How do you rest with 6 & 4 yr old kids? 🤔 Pain & Exhaustion ++ and used my last spoon to write this. Over & Out
Today I got to tell my story at UK Covid-19 Inquiry Every Story Matters event. It was truly harrowing listening to what people have been through. The denial of Covid and Long Covid continues to be a big source of pain for those of us bereaved or disabled by it 1/3
One full day free of pain. That’s what I’d like for Christmas. 🎅 🙏
Long covid sucks arse.
It’s been pain every day for 3 sodding years, but today is a 🤬day.
Moan over, normal service (and painted on smile) will resume shortly.
@LCNMUK
What Long Covid means to me? LOSS.
Loss of health, loss of income, loss of dignity, loss of identity, loss of career, loss of stability, loss of security, loss of family, loss of friends, loss of time, loss of memories.
We don’t want to be this way. Would you? 🤔
#LongCovid
@covidinquiryuk
Not everyone ‘looks’ disabled. But we are. We are traumatised, in pain and trying to make it through every day. It takes every ounce of strength I have to paint my smile on and be there for my husband and children.
Long Covid disabled me aged 33.
Husband has
#LongCovid
. After working hard to get himself well and paying out thousands in private treatment, back to work full time. It’s hard, but he’s been coping until they added additional early and late shifts out of hours.
The won’t accommodate reasonable adjustments 1/2
I was disabled with
#LongCovid
& damage from working on a
#Covid
ward. Please DON’T
#vote
#Tory
tomorrow. That would just reinforce the message that what they did to us is ok.
#PPEScandal
They clapped us, ignored us, sacked us and abandoned us.
#NHS
#HeroToZero
Vote them out!🙏
Two chapters in to The Long Covid Handbook and it is brilliant. My trained nurse head is enjoying both aspects to the book, the brain fog does mean I’m re reading most pages several times to take it in, but what a breath of fresh air. Good work
@gezmedinger
@Daltmann10
and thanks
Yesterday I posted about how I was feeling. I thought it might just resonate with a few of the very wonderful people that Covid has damaged. So far it’s had 700k views. I’m not a celebrity or anyone important, but I think people are fed up with the lies.
Thank you all ❤️
On a day like today, it’s good to see decent journalists telling our story. Thanks
@samwollaston
and Lucy for telling your story and bravely sharing the reality of this condition ❤️ 💪
The reality of PEM - legs up for blood flow, electrolytes, all encompassing fatigue, slurred and stuttering, word finding difficulty, memory loss, frustration, freezing cold, covid toes, top to toe pain,
So yea, I made it to London, but I nearly didn’t make it back!
#LongCovid
There is ALWAYS a price to pay when you have
#LongCovid
Off to see the Cardiologist today 🤞
And just to make it worse, I am being sacked tomorrow. It’s my final day as an NHS Nurse, one disabled by LC. This emotional turmoil will only add to and compact these symptoms. 3/3
@LindenLyn
The biggest help has been talking to fellow people with Long Covid. There are thousands of us and together we will move mountains to find a way to recovery. If he isn’t already, please ask him to join one of the many support groups on Facebook, there are lots of handy tips on it
It takes a lot of strength to bare your soul, your illness and your disability to the world. But this is what we with Long Covid have been reduced to. It’s the only way to be heard. Well done
@LCD4A
, proud of you the stand you are taking! 💪 🦠 😷 🦽🩻
Thank you for all the lovely well wishes, it’s heartwarming 🥰 for the remaining nonsense about vaccines etc - I got Long Covid pre vaccine and I’m extremely at risk of re infection as
#LongCovid
shot my immune system to bits. Please don’t ask again! 🤦♀️
@LongCovidHell
Oh no, I’m so sorry! We are on 6th infection since beginning of pandemic. Grim isn’t it, the heart deflating feeling when you get that little mark! Things that help me - electrolyte drinks, multi vitamins and Vit D, Echinacea, regular pain relief, fluids ++, Get Well Soon! 🫂
@earthy__crunchy
I haven’t left my house, my sons brought it home from school with them because U.K. schools don’t prevent their staff or students from coming in covid positive. I wear masks as I when I can do, but sometimes my breathing is so bad I am unable to wear.
He is at breaking point. Today, still refused to go back to normal
#working
pattern.
Why are we causing further suffering to these people?! You want them to work?! Make REASONABLE ADJUSTMENTS!!
Picking up the pieces of the man I love because disability is apparently a crime!
I would like to submit my own question ‘Would people rather be at home, in pain, freezing cold, too fatigued to get washed and dressed, or would they rather be fit and well enough to have a life including the social and contribution aspects of work? 🤔 Answers to
@RishiSunak
🤥
There are a few walks in life that you remember. Walking up the aisle to get married, walking out of hospital with your newborn baby. But this walk is definitely up there. And it’s for my husband and babies I did it. 1/2
Do you know, I would love to put on a party dress, have a couple to drink and have the energy to have a dance a laugh and a chat without knowing an MCAS flare is incoming followed by post exertional malaise and pain.
Long covid sucks arse every day, but especially at Christmas!
@Mellycat6
@S52Sarah
How can it make something worse if it doesn’t exist?I had this months before vaccines were available, I was on a covid ward, caring for people dying of covid. But you carry on with your small minded comments, the rest of us know the truth! Educate yourself! Have a nice day! 🤦♀️
Looking forward to this, I’m 36 year old nurse disabled
#longcovid
from a covid ward. But also a little bit nervous to watch, there’s a lot of barely concealed hurt, anger, upset and disgust. It could be opening Pandora’s box for a lot of us. But thank you for telling our story!
Today
@ITV
screened the first episode of BREATHTAKING to a cinema full of press. Nerve-wracking, nail-biting, exciting. How I hope we’ve done justice to the experiences of NHS staff 💙
but I absolutely encourage people to attend these events and tell them how it really affected you. If Covid was nothing but some time off work and a minor inconvenience to you, good for you. But for the many, not the few, it has been life changing. I applaud everyone 2/3
Ahhh the post holiday fatigue is kicking in, mind blank, can’t think, heart rate going crazy, app and monitor telling me off, widespread pain, walked a few minutes and have to sit down. Yesterday I had to sleep for 2 hours just to make the boys packed lunches. 1/3
I’m just wondering if any of my pals in the long covid community are feeling triggered by the Post Office Scandal? I think a lot of us feel a lot of the same emotions about our lives changing forever and the impact and heartache caused. Any thoughts? Love and light to you all ❤️
@doctor_oxford
As a Covid Ward Nurse who has been disabled with
#LongCovid
, I salute you. Watched episode 1 last night, nightmares all night. It brought back things that I had long buried. Today watched 2&3. Two hours of tears. Hard to watch, very triggering, but also healing. Covid isn’t over
I would be very grateful if my fellow Long Covid warriors would share this link and answer the 1 minute long survey. It’s for U.K. NHS staff (2019-now) with Long Covid to complete. The data will be used to support NHS staff with Long Covid. Many thanks!
My husband and I both have
#LongCovid
and we really really struggled with the care of our 2 toddler children. They had to grow up knowing their parents are disabled from a virus. We never wanted them to carry this burden, but we are the luckiest parents as they both so caring ❤️
Have you ever had flu but still had to parent small children? Imagine doing that for 4 yrs instead of 10 days. Now imagine the kids have the flu too.
In
#Ireland
, we've many cases of parents w
#LongCovid
caring for kids who also have LC.
They need their doctors to learn about LC!
I remain very proud of this programme, mainly because it got people talking about Long Covid. A year on and people are still fighting for Injury allowance, Ill health retirement, compensation, treatment. It’s not good enough
@UKgovGHS
@NHSEngland
@NHSuk
As the
@itv
drama
#Breathtaking
devastatingly shows
🔹NHS workers who put their lives on the line during the pandemic were let down by the Government.
🔹While we, the public, were LIED to endlessly.
🔹As workers barely had PPE, ministers threw billions at inadequate suppliers
Long Covid changed our lives and unbalanced our future and I won’t stop campaigning until that balance is rectified.
Long Covid Strong 💪 the strength of the few to fight for the many. 2/2
Homeward bound to hubby and our babies, thanks for the hard work of Kevin and the
@GAsolicitors
team today. And thanks for the hundreds of supportive messages. It’s kept me going! 😘 🥱
Where was this letter 2 even 3 years ago? Welcome to the party trade unions! 🤦♀️ There’s been more campaigning by unwell people with the condition than their Unions. People are already sacked and are financially adrift!
@theRCN
@TheBMA
@KeyWorkerPetUK
2 million people living in private households in England and Scotland were experiencing self-reported long COVID
Symptoms continuing for more than four weeks after a confirmed or suspected
#COVID19
infection that were not explained by something else.
➡️
@DWPgovuk
@GOVUK
do us a favour & state
#LongCovid
of 12 months+ is a disability. Despite PIP, Industrial Injuries DB, Blue Badge and 3yrs+ symptoms, my employers STILL say I’m not disabled under the Equality Act. We are sick and still fighting to have this recognised! 1/
I’ve found
#InternationalNursesDay
triggering. any of you felt the same? I feel abandoned by colleagues & friends.
But I am so grateful for the
#LongCovid
Community, I haven’t had to face this alone.
Happy International Nurses Day fellow warriors, Once a Nurse, always a Nurse💙
@LCNMUK
@theRCN
@amibanerjee1
@long_covid
#RCN22
Finding myself in tears after listening to the stories of nurses with Long Covid at RCN Congress today. If it’s not bad enough being unable to work, being left disabled and traumatised, we can no longer dream 1/
Exciting news! The Stimulate-ICP trial has opened to people with existing Long Covid now. Previously it was only for newly diagnosed people. If you would like to hear more about the trial, please check out the latest update on this link - 👇
I can’t get over, that 4 yrs on from the first Covid death in the U.K on this
#NationalDayofReflection
, 3.5 yrs since LC 1st diagnosed, the
@NHSuk
staff still have to care for people & no adequate PPE. It’s endangering them, putting them at risk of developing
#LongCOVID
1/
Utter nonsense, the public information given out over Long Covid has been pathetic. 2 million people + have Long Covid and they think 1 very underwhelming video is enough to raise awareness. It’s time to acknowledge the incompetence!
@covidinquiryuk
@LongCovidSOS
@KeyWorkerPetUK
Our KC questions why the
@DHSCgovuk
published only one awareness video on the risks of developing
#LongCovid
"Do you agree overall that the information provided was insufficient to warn people of the symptoms of
#LongCovid
& that it is caused by
#COVID19
?"
Wormald doesn't agree
Thank you to
@SafeDavid3
for his continued support of the
#LongCovid
community. We are SO grateful and understand what it takes to put your head above the parapet! Please share widely 🙏
A great read, thanks David! ❤️ 🦠
#LongCovid
- It’s clear. We can’t all be wrong. So many of us fought the PPE scandal at a local and national level. It’s time
@GOVUK
@DHSCgovuk
@NIH
took responsibility for their actions and their contribution to greatest mass disabling event since WW1
#unaccountableIPC
@DRTomlinsonEP
Excellent interview with Infectious diseases expert Dr Nathalie Macdermott on BBC Sounds.
Calls out the secretive "IPC Cell" hidden behind their cloak of anonymity.
Interview starts at 02:40.
Well worth 15 minutes of your time listening to this.
@MLS_Dave
@earthy__crunchy
Thank you! Hilarious how many people have commented on how I could have avoided it. Apparently I should wear a mask 24/7, live in a cave with no one else and I should get a new immune system. Despite how incredibly crap I feel today, these people have made me laugh! Thanks bud!
@LongCovidHell
I hear you, I absolutely sobbed when I tested yesterday. I’m so glad some people get ‘just a cold’, I don’t want people to suffer, just a little bit understanding for those of us absolutely broken by it would be wonderful xx
@nicb188
@LCNMUK
I absolute hear you, the endless stress of it hanging over your head can’t possibly be good for mental health, recovery etc. I really hope you get the closure and healing you deserve xx
Just saw this, and it hit me like a tonne of bricks. This is exactly what those of us with
#LongCovid
experience every day.
Be brave, draw your line in the sand. Don’t be afraid of your voice. We know the truth.
Headlines like this 😡when will they see the correlation to
#LongCovid
I would love nothing more to be working in the career I loved, I don’t want to be at home every day while people around me get on with their lives. If they hadn’t downgraded the PPE I would still be working!!
A reminder that if you are trying to pursue a legal claim for contracting Long Covid from your NHS employment the cut off date is now only 2 weeks away. If you still want to pursue a claim please contact Kevin.Digby
@gasolicitors
.com
Union cases, other firm cases still be reviewed
“FLiRt infection can still lay you really low for a week, carries a significant risk of leading to long-term, disabling long Covid... We’re far from a state where this is ‘just like a cold’ and should just be ignored.”
Well done and thanks Danny! 👏
@Daltmann10
#LongCovid
My GP surgery has taken down screens, no masks, no social distancing despite Covid being rife in the area. Apparently covid is over! Please remember, the only way to avoid Long Covid and potential disability is not to get Covid in the first place! 😷 🦠
@SouthWestWater
This is your map area of service issues. That covers a lot of Paignton districts that are not included in this post. It’s time you posted a list of affected streets or postcodes, this gambling with people’s health is not on. There are very vulnerable and sick people in this!
Take some time for you today, spend quality time with loved ones, reflect, remember, have a lie in, take that extra slice of cake. Whatever YOU need today. Do it.
Thinking of all those who have been affected by watching
#breathtaking
, and the bereaved, the sick, the disabled.
The brilliant team at
#STIMULATE_ICP
are releasing a new Long Covid Tool today to benefit people with
#LongCovid
. This tool will help those trying to access support and appropriate healthcare, it will be printable for you to take to appointments. ❤️
@theRCN
Never mind pay, what most of us wanted was adequate PPE and not to be left disabled and lose our careers from Covid. The exodus of staff will also be related to that, and after
#BREATHTAKING
be lucky if there are and staff left, let alone half. Why would anyone want to join?
You wouldn’t know any of this is going on just by looking at me. It’s very easy to judge when you don’t live like this. This relapse could be days, weeks or even months long, just to be able to be with my family on holiday 😞
Exclusive: The Government has incinerated or written off £1.4 BILLION worth of Covid PPE, provided by one supplier in the summer of 2020 - it is the single most wasteful public contract of the whole pandemic. Thread 1/
This is a MUST listen for those with Long Covid
More details on submitting a legal claim for Healthcare workers contracting Covid at work.
Thanks to
@JulieTa58407536
and Kevin
@GAsolicitors
Listen here ⬇️ and please share widely!
The government ignored this endless planning, and all the points and failures raised have got in into this mess now. There are no ACCURATE figures for staff with Long Covid, but thought to be 13k nurses!! We are the largest impacted workforce, and still we are not heard! 4/
A dear friend asked me how I was feeling today. This was my reply-
I cried watching Keir Starmer going into Downing Street. Not because of him, or his politics, but because I’m so glad the era of the pandemic Tories is over. Lots of them wiped out, the rest lingering in the 1/
The NHS is broken.
In the last week, friends and family have had this in Torbay and South Devon NHS Foundation Trust
A 10 hour wait for an ambulance for a heart attack, then the next 8 hours of care delivered in the back of the ambulance.
Cont..
@LongCovidAdvoc
When I bought children into this world, I was fit and able. Covid changed that, and people still seem to be amazed that the virus that KILLS thousands has DISABLED millions, including young parents. I would do anything to get better 😞